Opals Journey The beginning
Opal May entered our world on March 25, 2025, and from the very beginning, her life was marked by incredible strength.
Shortly after she was born, it became clear that something was wrong. Opal was not getting enough oxygenated blood through her body, and everything quickly became urgent. We watched the NICU team step in to save her life, intubating her and giving her the support her tiny body needed to keep fighting.
At just three days old, Opal underwent her first heart procedure—a cardiac catheterization with a balloon placed in her pulmonary valve to help improve blood flow. She spent the first 31 days of her life in the NICU, where we learned how fragile and precious life can be, and how strong one tiny little girl could be.
Opal was born with a complex congenital heart disease, including Complete Unbalanced AVSD, DORV, single ventricle physiology, pulmonary stenosis, and pulmonary regurgitation. She also faced several other serious medical challenges, including congenital hypoparathyroidism, hemi vertebrae in her spine, low T cells, feeding difficulties requiring lifelong feeding tube support, and was later diagnosed with DiGeorge syndrome.
Through every diagnosis, procedure, and hard moment, Opal continued to show us what true courage looks like. She was so much more than her medical complexity. She was beautiful, deeply loved, and incredibly strong.
Opal’s story is one of love, resilience, and a strength that continues to inspire us every day. Her life, no matter how short, left a forever impact. She is the heart behind everything we do, and her legacy continues to shine through every act of love done in her name
After the Nicu - The rollercoaster
.After everything Opal had already been through, we were finally able to bring her home.
That moment meant everything.
After weeks in the NICU, being home felt like a breath of fresh air—like we could finally just be her family outside of hospital walls. Even with all of her medical needs, being together at home was something we had held onto through every hard day.
But about a month later, things changed again.
Opal began struggling more with feeding and wasn’t gaining weight the way she needed to. What started as concern quickly turned into another hospital admission—this time in the PICU. We thought it might be a short stay, but it became a journey that lasted over a month.
During that time, she went through countless tests as doctors worked to understand what her body needed. Every day was filled with questions, waiting, and hoping for answers.
Eventually, they determined that Opal had slow gastric emptying, which meant her body wasn’t moving food through her system the way it should. To help her, they placed an ND (nasoduodenal) feeding tube, allowing nutrition to bypass her stomach and go directly into her intestines.
As part of her long-term care, Opal then underwent surgery to place a G-tube, with the plan to eventually convert it into a GJ tube to better support her feeding needs.
But after her surgery, everything took a sudden and serious turn.
Opal went into active heart failure and respiratory failure.
Once again, we found ourselves watching as the medical team moved quickly around her—doing everything they could to stabilize her. She was intubated again and placed on a breathing tube for five days.
Those were some of the hardest days.
Watching your child go through that—not once, but again—changes you. It’s a kind of fear and helplessness that words can’t fully capture.
And yet… Opal fought.
She fought her way through heart failure.
She fought her way through respiratory failure.
She fought her way back off the ventilator.
After five long days, she was able to come off the breathing tube.
And somehow, after everything her tiny body had endured, she stabilized enough for us to bring her home again.
The day Opal gained her wings
As Opal’s journey continued, we came to one of the most significant and emotional milestones in her care—her next heart surgery.
By this point, we had learned just how complex her heart truly was. Every step forward carried both hope and fear, and this surgery was meant to be an important part of her single ventricle pathway—a step toward giving her heart the circulation it needed to keep going.
We held onto that hope.
But during surgery, things became more complicated than anyone expected.
Because of Opal’s unique anatomy, one Glenn procedure was not enough. Instead, surgeons had to place two Glenn shunts to help direct blood flow from her upper body to her lungs. It was something rarely needed, but Opal’s heart required a different approach—one that reflected just how complex and unique she was.
Along with this, Opal was also living with pulmonary hypertension, which made everything even more delicate.
The Glenn procedure depends on passive blood flow to the lungs—meaning the blood flows without the heart pumping it directly. But pulmonary hypertension creates increased pressure in the lungs, making it much harder for that blood to move the way it’s supposed to.
In simple terms, her heart and lungs were working against each other.
Even before surgery was over, we knew this was going to be a difficult road.
After surgery, Opal faced serious and life-threatening complications.
Her body struggled to adapt to the new circulation. Despite every effort from her care team, her condition became critical. The balance her body needed just wasn’t coming together the way everyone had hoped.
That’s when she was placed on ECMO.
ECMO is a form of life support that takes over the work of the heart and lungs—giving the body a chance to rest and heal when it can’t do it on its own. It is one of the most intense levels of support a child can receive.
For nine days, Opal remained on ECMO.
Nine days of holding onto hope.
Nine days of watching, waiting, and praying.
Nine days of loving her through every moment.
Even in the most critical condition, Opal continued to show us her strength. She fought in ways that are impossible to fully put into words. Her body had already endured so much—more than most could imagine—and still, she kept going.
We stayed by her side through it all.
We talked to her.
We held her hand.
We reminded her how deeply she was loved.
Every second mattered.
But despite her strength, despite the care, despite every effort made to save her—her tiny body had been through too much.
The complications were too great.
On October 18, 2025, Opal gained her angel wings.
There is no way to fully explain what that moment feels like.
It is a silence that changes everything.
A love that has nowhere to go, but never disappears.
A piece of your heart that will always belong to her.
But even in the heartbreak, there is something that remains unshaken:
Opal’s life mattered.
She was never just her diagnoses.
She was never just her medical journey.
She was a little girl who brought light into every space she entered.
She taught us strength we didn’t know we had.
She showed us love in its purest, deepest form.
And she continues to guide everything we do.
Opal’s story did not end that day.
It lives on in every act of kindness.
In every family we support.
In every moment her name is spoken.
She is still here—in a different way.
She is our why.
She is our purpose.
She is our forever. 🤍
Her story didn’t end here—it lives on in every act of love, every life she touches, and every heart she changed forever.”
